Have been having trouble with eye inflamation. Now on prednisone, 1 drop each hour plus isopto homatropine three times a day and mexidex before bed.
I was told today that they could find no reason for the inflamation and that I should suspect lyme.
I see my llmd next wednesday but would appreciate hearing from anyone on how this would be treated.
Have to admit I am feeling shocked and a little scared.
Thanks for your help.
regards maps
Posted by MorningSong (Member # 19989) on :
Maps-
Im sorry to hear what you are going through regarding your eye. I know it is very scary. Im not a doctor, and what I have learned from others on this site is that eye inflammation can have many causes.
Some have stated it is Lyme. Also some medications we take can cause them:
Are you having other symptoms?
Posted by maps (Member # 19758) on :
Thanks morningsong
I don't know what you mean about other symptoms, i am positive for lyme and babs.
The eye specialist knows what I am taking and she is the one who said we have to consider lyme as everything else has been ruled out.
regards
Posted by Robin123 (Member # 9197) on :
Hi - All my Lyme eye symptoms disappear by drinking a little mangosteen juice daily. It's an antioxidant, anti-inflammatory juice.
It's sold at health food stores, online, and the strongest is Xango, sold multi-level.
I drink the Ultra brand, with 70 minerals added.
If you try it, just drink a little, with water.
Posted by savebabe (Member # 9847) on :
Bart is the co-infection that really hit my eye. I found that levaquin and lyme treatment really helped with my eye inflammation.
Posted by Pocono Lyme (Member # 5939) on :
I had pretty much the same experience as savebabe. Levaquin or Cipro cleared my Iritis/ Iridocyclitis. Been on both. First Levaquin when the Iritis was cleared.
I did have a problem with steroid drops though. The blood vessels ruptured, extreme pain, and an increased intraocular pressure of 47.
I was switched to Xibrom which is a nonsteroidal drop. They work well without the nasty side effects.
Posted by Lymeorsomething (Member # 16359) on :
Did anyone have floaters as a symptom of inflammation?
Posted by Robin123 (Member # 9197) on :
Yes, and gone from drinking mangosteen juice.
Posted by maps (Member # 19758) on :
Thanks for the input, so it looks like this can be treated by my llmd then.
regards maps
Posted by Pinelady (Member # 18524) on :
I did antibiotic drops that burned like fire in the
beginning. So I think it hit it as now it does not.
Eyes are in the top 5 for finding in autopsy of
animals. So If you dont have a virus such as
shingles or herpes I would treat for lyme too.
Posted by klutzo (Member # 5701) on :
I had a large floater and pain, plus goo running out of my eye and down my face from my right eye. This turned out to be uveitis from Lyme.
My left eye put out showers of sparks on the left side. This turned out to be a separation of the vitreous humor from the eye wall, due to uveitis from Lyme.
My right eye quickly became dependent upon steroid drops. I could not miss a dose or all hell broke lose again.
I was very upset about having to use steroids with Lyme, so I started researching for other options.
Also, uveitis is the third leading cause of blindness in the USA and the steroids can eventually cause cataracts, macular cysts, and other problems.
I found Benfotiamine and within 3 weeks was off the eye drops and all eye pain was gone. My opthalmologist was so impressed, he asked me to get him a copy of the study I read that gave me the idea to use benfotiamine.
The study is from the University of Texas. They used the benfotiamine for 12 weeks before it equaled the results of the steroid drops, so my inflammation may not have been as bad as some.
Benfotiamine is a lipidized form of Vitamin B1 (Thiamine). I take one 150 mg. capsule daily. It costs $11.77 for a 4 month supply at www.vitacost.com.
If trying it, I would keep it away from any other B complex vitamins you take, so you don't develop an imbalance.
It may not work for you like it did for me, but it's safe, cheap, and worth a try.
klutzo
Posted by maps (Member # 19758) on :
Maybe dumb question but does that mean that this inflamation is going to be a long term thing or will the meds I am on make it better.
Another thing, in which way are the steroids bad?
Thanks for all the replies.
regards maps
Posted by Lymeorsomething (Member # 16359) on :
Klutzo, thanks for the interesting info. Here is a related abstract....
Lipophilic Vitamin-B1 Analogue Benfotiamine Prevents Endotoxin-Induced Uveitis in Rats http://tinyurl.com/bff3tp Posted by Pinelady (Member # 18524) on :
Sometimes steroids can save your site as talked about here not too long ago.
Posted by WildCondor (Member # 434) on :
I saw a Lyme literate Eye doc and needed 2 different types of antibiotics for the eye. One was a drop, one was a cream. After treatment, my Lyme of the eye was gone for good.
Posted by klutzo (Member # 5701) on :
Dear LYMEORSOMETHING, That link you provided is the one I got my idea from and is the same 15 page study I printed and gave to my eye doctor. Brilliant minds think alike ;-)
- - - - - - - - - - - -
Dear MAPS, Steroids suppress immunity, so they are never good for people whose immunity is already suppressed, like ours is.
The innate half of our immune system is as suppressed as it is in AIDS patients, which is why some researchers call this "AIDS Minor".
The acquired half of our immunity is running all the time, in an over-reactive mode, hence all the allergies, chemical sensitivities, etc.
Each half handles different things, and they can't both run at the same time. Lyme is a disease that would normally be killed by the innate system, so it cleverly convinces the immune system that it is a bug that should be killed by the acquired system, thus allowing it to grow unimpeded.
Steroid eye drops are not nearly as bad as injections, which are not nearly as bad as orals.
I can testify to this personally,having been stung 9 times by insects I am allergic to in the past 7 years.
Because my reaction to a recent insect sting came back again and my throat started to close again on the second day, I was given a total steroid dose of 300 mgs., which is outrageous. (A normal insect anaphylaxis dose is 120 mgs.)
When using the eye drops, it is recommended to put your finger over your tear duct and squeeze your eye shut for the first two minutes.
The finger will prevent any of the steroids from traveling down your lachrymal duct and going into general circulation (per www.uveitis.org).
I also read that a PICC line should be inserted and backup ABX started 48 hrs. before starting the drops, the drops should not be used more than 14 days, and the ABX s/b continued 48 hrs. after the drops are stopped.
Many of us become dependent upon the steroid drops, and stopping them after 14 days is not possible. The result of stopping for me was an instant loss of vision, and the long term result can be blindness.
A surprise to me in reading about all this was to learn that no part of the immune system can reach many areas in the eye, one reason why Lyme likes to go there.
Also, I am allergic to all of the Lyme effective ABX, so I had no back up to protect me from the Lyme growth that would occur if the drops got into my circulation.
Those are some reasons why I decided to try the benfotiamine.
I am suffering horribly right now from injected and oral steroids that I had to take to save my life after a fire ant sting.
I have had thrush, intestinal yeast, vulvar vestibulitis, and some mild signs of lung yeast for over a month, despite taking every drug and supplement known to man.
I may have to go in the hospital and have dangerous intravenous drugs to stop the yeast overgrowth. A person with a normal immune system does not get this severe reaction to steroids, not even to the amt. I was given.
I was reading on an HIV web site about how to get rid of yeast, where an HIV doctor said that nobody with a CD4 count above 100 will ever get thrush. He said a normal count is 500.
This implies a serious immune deficiency. So, in summary, sometimes steroids are the lesser of two evils, but a vitamin is always preferable to a steroid, IMO, and long term use of vitamins will not cause cataracts or cysts.
Also, for those of you who are female, my eye doctor warned me that eye makeup is strictly off limits when using steroid eye drops. The risk of infection is too high.
klutzo
Posted by maps (Member # 19758) on :
Klutzo:
Thank you for taking the time to post this in detail for me, it has answered all my questions very well.
I have stopped taking clarithamicin just to make sure this is not being caused by the antibiotics.
Lymeorsomething: going to print the link you gave me, will be seeing llmd on Wednesday so going to give him the info.
Thanks everyone for your input.
Hoping that it turns out to be caused by the antibiotics.
regards maps
Posted by imagine2 (Member # 3136) on :
Wild Condor, Can you tell me more about the abx you took for the eyes and how long you took it. I had no idea this was a possibility.
I have not been diagnosed with uveitis but eye symptoms have been one of my worst lyme symptoms and have gotten worse since starting amox.
Eyeball sore to touch, difficult to read, stinging,blurred vision. It started when I was driving. Had to blink constantly to focus on the road. Scared me.
I dont know of a lyme literate ophthalmologist but would like to ask my llmd if I can try your abx.
Thanks for your help
Posted by WildCondor (Member # 434) on :
I'm honestly not sure what they were since it was 10 years ago now. They were common antibiotics though. After treatment all my eye symptoms went away. I took the drops for 2 months and the cream for 4 weeks.
Wish I could remember the names!
Posted by CheriAnn (Member # 19673) on :
I so wish you could remember what you took WildCondor. My on remaining symptom is a ever so slight blurriness in my right eye and a slight halo at night. This thread has been so helpful. I have wondered if I should even keep considering this a symptom since it is so minor but am hesitant to go of ABX til every "symptom" no matter how minor is gone.
Posted by WildCondor (Member # 434) on :
I saw a good Lyme literate Opthamologist. I suppose I can call and get my records and let you know what it was. I will try!!